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Gluten Free RN

Gluten Free RN, Nadine Grzeskowiak RN BSN CEN, talks about every aspect of celiac disease, non-celiac gluten sensitivity, gluten free lifestyle & diet, Paleo lifestyle, microbiome and all related issues.
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Now displaying: July, 2017
Jul 28, 2017

Few things are as painful as losing a loved one to an overdose. Addiction is such a powerful demon, and most of us have friends or family who are facing it right now. It is easy to feel helpless, believing that there is little you can do to ease their pain. But what if a diet change could resolve the physical and psychological pain at the root of the dependency? You might be surprised to learn that gluten binds with the opioid receptors in the brain, functioning as a ‘gateway drug’ to other addictions.

Today the Gluten Free RN shares her experiences with addiction and overdose during her 17-year career in the ER, explaining how she made the connection between undiagnosed celiac disease and addiction issues. She discusses the US opioid epidemic and how a mass screening for celiac disease could prevent such widespread substance abuse. Listen as she describes the morphine-like effects of gluten on your brain, the role of the microbiome in dictating cravings, and why gluten may be at the root of the pain that leads patients to self-medicate with dangerous recreational drugs.

The sad truth is that 91 Americans die every day from an opioid overdose. Because undiagnosed celiac disease goes hand in hand with addiction, is it past time to get our loved ones tested. Suggest it today -- it could save a life.

What’s Discussed:

The recent flood of headlines regarding the US opioid epidemic

How exorphins affect the brain

  • Endorphins release chemical to make person feel good (i.e.: runner’s high)
  • Ingest exorphins, make feel differently (e.g.: good, tired, sedate)
  • Includes food, alcohol, pharmaceuticals and recreation medications (marijuana, cocaine, heroin, methamphetamines)

How Narcan reverses a heroin overdose

  • Binds with opioid receptors

The potential connection between gluten and opioid addiction

  • Gluten binds with same receptors in brain
  • Addiction to gluten, dairy may be precursor to other addictions
  • Many self-medicate with ‘comfort food’ containing wheat and dairy (i.e.: pizza, mac and cheese)

The morphine-like effects of gluten and dairy on your brain

  • Very similar to narcotics
  • Elimination diet causes uncomfortable detox process
  • Can take a few days, several weeks
  • May experience fatigue, depression, abdominal pain, headaches
  • Feel better once body clear of damaging proteins

The substances patients abuse to treat pain

  • Prescription drugs
  • Over-the-counter drugs
  • Alcohol
  • Cigarettes
  • Recreational drugs (e.g.: methamphetamine, marijuana)

The symptoms of pain patients may experience due to gluten

  • Autoimmune issues
  • Intractable headaches
  • Psychological, emotional anguish

The data around opioid overdose in the US

  • 91 Americans die every day
  • 32,000 people die annually
  • Numbers likely much higher

How gluten sensitivity may lead to pain med addiction

  • Opioid receptors may be damaged, destroyed by gluten
  • Patient cannot absorb pain meds due to villous atrophy
  • Need stronger meds, higher dose

Common prescription meds for pain

  • Vicodin
  • Percocet
  • Morphine
  • Dilaudid

Why patients turn to heroin for pain relief

  • Less expensive to acquire
  • Easily accessible

How food can act as a ‘gateway drug’ to other addictions

  • Celiac disease causes nutrient deficiencies
  • Magnesium
  • Folic acid
  • B vitamins
  • D3
  • Addictions to alcohol, cigarettes, shopping, etc. seek to fill void
  • Eliminate gluten and heal intestines, addictions resolve

Why Nadine advocates a mass screening for celiac disease

  • HLA-DQ2, HLA-DQ8 gene carriers more susceptible to addiction issues
  • Identification can prevent opioid addiction

How ER departments treat alcoholics

  • Banana bag (liter of saline + multivitamin, thiamin, folic acid and magnesium sulfate)
  • Addresses nutrient deficiencies
  • Prevent the shakes, help patient detox gradually
  • Celiac disease may be underlying issue

The power of the microbiome

  • Tiny bacteria live in intestine
  • Dictate what we eat, drink through cravings
  • Communicate with brain (e.g.: yeast signals need for sugar)

The mental health issues caused by untreated celiac disease that may lead patients to self-medicate

  • Depression
  • Anxiety
  • Hallucinations
  • Schizophrenia
  • Bipolar disorder

Resources:

“Here’s How a Key Part of the Opioid Legislation is Not Working” in the Boston Globe

“Gluten Sensitivity May Be a Misnomer for Distinct Illnesses to Various Wheat Proteins” in Scientific American

“John F. Kennedy’s Pain Story: From Autoimmune Disease to Centralized Pain” in Practical Pain Management

“Malabsorption of Opioid Medications” in Practical Pain Management

“The Opioid Effects of Gluten Exorphins: Asymptomatic Celiac Disease” in the Journal of Health, Population and Nutrition

Connect with Nadine: 

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Melodies of the Danube Gluten-Free Cruise with Nadine

Books by Nadine:

Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism

Jul 21, 2017

There are a number of misconceptions about celiac disease, even within the medical community! Despite a growing body of research to the contrary, many practitioners still believe celiac disease to be strictly a gastrointestinal issue with a just a few tell-tale symptoms. It’s time to get the facts, and today the Gluten Free RN shares 21 important truths about celiac disease that you need to know.

 Nadine shares her take on the list compiled by Gluten Free Works, covering the truth about who is at risk, the wide variety of neurological symptoms a celiac patient might present, and the components of an optimal treatment plan. As the most common genetic autoimmune disease in the world, it is incredibly important that we understand how gluten exposure can damage the intestines and cause debilitating nutrient deficiencies.

 Nadine also explains why celiac disease often goes undiagnosed and how an astute practitioner is able to accurately interpret biopsies, antibody screenings and lab work. Get familiar with these 21 important facts about celiac disease, and become your own advocate!

 What’s Discussed: 

  1. Celiac disease is the most common genetic autoimmune disease in the world
  • Powerful as consumer group, ‘vote with dollars’
  • Purchasing fewer grains
  • More and more gluten-free products available
  • Choose grass-fed, no antibiotic/hormone meat
  • Look for local, organic, non-GMO produce
  1. Celiac disease is the most commonly misdiagnosed disease in the world
  • Patients often diagnosed with other disorders
  • Gluten-free diet necessary for symptoms to resolve
  1. Celiac disease blood tests are not pass/fail
  • Measure antibody levels
  • Suggest how likely intestinal biopsy will discover damage
  • 70% false negative
  • Anti-TG2 or IgA EMA antibodies indicate gut damage
  1. Celiac disease can affect any genetically predisposed person of every race of gender and can first present symptoms at any age
  • No one can be ruled out
  • HLA-DQ2, HLA-DQ8 indicate genetic predisposition
  • 30% of those diagnosed over age 60
  1. Optimal treatment of celiac disease includes a 100% strict gluten-free diet, nutrient deficiency identification and replenishment, and education and support that meet the physical and emotional needs of the patient
  • May need to eliminate dairy, soy, grains and legumes as well (anything that causes inflammation)
  • ‘Find your people’
  1. Most cases of unresponsive celiac disease are due to inadvertent gluten exposure, where the person is consuming gluten without realizing it
  • May not exhibit symptoms when exposed to gluten (airborne, via cross-contamination)
  • Have expert examine home environment to ferret out potential sources
  1. The average person with celiac disease has a normal body mass index
  • Traditionally thought to be underweight
  • Roughly 33% of celiac patients are overweight
  • Obesity indicates malnourishment (body’s attempt to store cheap energy)
  1. Silent celiac disease refers to a person who tests positive on blood test and villous atrophy on intestinal biopsy, but exhibits no overt symptoms
  • Roughly 50% of those diagnosed on screening exam would claim to have no symptoms
  • Astute practitioner recognizes warning signs
  1. Celiac disease presents submicroscopic damage causing nutrient deficiencies before villous atrophy
  • Damage can occur before endoscopy finds it
  • Marsh 1 damage is first stage, caused by gluten
  • Don’t wait for total villous atrophy (Marsh 4 damage) to adopt gluten-free diet
  • Ask knowledgeable practitioner to review biopsies, antibody screenings and lab work
  1. 50% of people diagnosed with celiac disease exhibit neurological symptoms at the time of diagnosis
  • Neuropathy (numbness or tingling in hands and feet)
  • Seizure disorders
  • Ticks (especially facial)
  • Bell’s palsy
  • Fasciculation of muscles
  • ‘Pins and needles’ in feet
  • Gastroparesis
  • Constipation (paralysis of intestines)
  1. Doctors consider celiac disease to be a gastrointestinal disease
  • Symptoms can be neurological
  • Medical professionals must be astute, recognize all 300 symptoms
  1. Anxiety can be the only symptom of celiac disease
  • Due to nutrient deficiencies
  • Irritability can be sign of gluten sensitivity
  1. Celiac disease tests are not pass/fail
  • Follow up testing should be performed if symptoms don’t resolve
  • ‘Seroconversion’ means can test negative one day, then positive two weeks later
  1. Patient education is the most important predictor of good clinical outcome in celiac disease
  • Find a practitioner to help develop diet for health/lifestyle
  • Pursue body work to repair damage, strengthen body
  1. Celiac disease symptoms can be completely different among family members
  2. Celiac symptoms number over 300, affecting every system and any organ
  1. Symptoms in celiac disease are due to inflammation and/or nutrient deficiencies from chronic intestinal damage
  • Gluten-free diet will heal intestines, eliminate inflammation
  • Requires time, energy and investment in best possible food
  1. Celiac disease diagnosis can take ten years or more from the time symptoms first present
  • Frequently last disease considered by doctors (in for-profit healthcare systems)
  • Countries with universal health care diagnose much more quickly
  1. Celiac disease affects over three million people in the US, yet the vast majority are not diagnosed
  • Symptoms considered definitive diagnoses, treated superficially
  • Type 1 diabetes
  • MS
  • ALS
  • Lupus
  • Sjögren’s syndrome
  • Anemia
  • Osteoporosis
  • Failure to thrive
  • Eating disorders
  • Underlying cause (celiac disease) left untreated
  1. Exposure to gluten is the most important environmental factor in celiac disease
  • Sooner gluten is removed, more likely to achieve full remission
  • If gluten is never introduced, celiac disease will never develop
  1. Although celiac disease is now known to cause over 300 symptoms, the medical community has traditionally instructed doctors that celiac disease affects children, presenting symptoms of diarrhea, wasting muscles, anemia, and abdominal distention
  • Be your own advocate 

 

Resources:

Recognizing Celiac Disease: Signs, Symptoms, Associated Disorders and Complications by Cleo J. Libonati

21 Important Celiac Disease Facts You Need to Know…

Gluten Free Works

Connect with Nadine: 

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Melodies of the Danube Gluten-Free Cruise with Nadine

Books by Nadine:

Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism

Jul 14, 2017

You don’t have to prove to anyone that you have celiac disease proper. Because food functions as both medicine and poison, it is important to have all the facts before you get talked into a gluten challenge … and the fact is, going back on gluten after you have adopted a gluten-free diet will cause organ damage.

The Gluten Free RN speaks to the motivation behind doing a gluten challenge, the consequences for celiac and gluten sensitive patients, and her work as a patient advocate to discourage people from being talked into a gluten challenge. She offers a detailed risk versus reward analysis of braving a gluten challenge, explaining how the maintenance of a gluten-free diet prevents the development of celiac disease and other autoimmune disorders.

Nadine also covers the unreliable nature of celiac testing in the US, where the medical community lacks savvy in interpreting results, and explains why biopsy results are no longer considered the gold standard of celiac testing. Listen in to understand the recommended diet for those who have adopted a gluten-free lifestyle and why it requires a long-term commitment. Get armed with information and protect yourself and your family from the dangerous, irreversible consequences of a gluten challenge!

What’s Discussed: 

The gluten free lifestyle

  • Involves long-term change
  • Can’t take days off

 Why you should be cautious of restaurants with a gluten-free menu

  • Very few actually deliver gluten-free meal
  • Employees may not understand contamination, cross-contamination

 The advantages of living in the Northwest US

 Nadine’s recommendations re: food options

  • Organic produce
  • Grass-fed meat
  • Whole foods produced locally

 The misguided reason why people do a gluten challenge

  • Want to prove presence of celiac disease
  • You don’t have to prove to anyone, especially if HLA-DQ2 or HLA-DQ8 gene carrier
  • 30-50% of population has genetic predisposition to celiac disease

 The value of a gluten-free diet in preventative medicine

  • Averts celiac disease and associated issues
  • Prevents other autoimmune disorders
  • Type 1 diabetes
  • Lupus
  • Sjögren’s
  • Rheumatoid arthritis
  • MS
  • ALS

 What it means to do a gluten challenge

  • Targets patients who have adopted a gluten-free diet
  • Requires they consume gluten (2-6 slices of bread/day)

 The consequences of a gluten challenge on celiac and gluten sensitive patients

  • Seizures
  • GI bleeds
  • Appearance of bowel cancer, bone cancer
  • Inability to get out of bed
  • Organ damage

 The risks vs. rewards of enduring a gluten challenge

  • No benefit other than proving presence of celiac disease
  • Can be thrown into refractory celiac disease (permanent, irreversible damage to intestines)

 Why Nadine would never do a gluten challenge

 Why biopsy results are no longer considered the gold standard of celiac testing

  • Often misinterpreted, read incorrectly
  • Damage can be patchy

 Why an antibody panel can be unreliable in identifying celiac disease

  • Takes time for body to mount autoimmune response
  • 70% false negative nationwide

 How long it takes to obtain celiac diagnosis

  • Two to three weeks in countries where medical community is savvy about celiac disease
  • Nine to 15 years in US

 Nadine’s advice around celiac testing

 The enduring nature of celiac disease

  • Doesn’t go away
  • Children don’t grow out of it

 Nadine’s nutrition guidelines for celiac patients

  • Gluten- and dairy-free
  • Ideally Paleo
  • Nutrient dense foods

 Nadine’s work as a patient advocate

  • Seeks to help people stay healthy, avoid illness/disease
  • Patients get lives back, active and thriving

Resources:

Whole Foods

Natural Grocers

First Alternative Co-op

LifeSource Co-op

Cyrex Laboratories

LabCorp

EnteroLab

Connect with Nadine: 

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Melodies of the Danube Gluten-Free Cruise with Nadine

Books by Nadine:

Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism

Jul 7, 2017

Celiac disease is grossly underdiagnosed in the United States in large part because the medical community is operating on outdated information about the condition. And despite the recommendations of the National Institute of Health back in 2004, we have yet to implement a mass screening for celiac disease, and health care providers remain alarmingly uninformed.

The Gluten Free RN is taking steps to remedy the situation by sharing the basics for medical professionals. Today she covers the WHO’s definition of celiac disease, how our understanding of the condition has change over time, and some common misconceptions about celiac disease. She also explains the top symptoms, recommended testing for celiac disease and gluten sensitivity, and the neurological nature of the disorder.

Listen in to learn what health care providers need to know about this undiagnosed epidemic, the complex web of health issues that may result from undiagnosed celiac disease, and why it is important to have a high index of suspicion and include celiac testing on every differential diagnosis. Help your patients go gluten-free and collect something other than autoimmune disorders! 

What’s Discussed: 

The standard of care in the US

  • Providers should have diagnosed at least 1% of patients with celiac disease
  • Undiagnosed for 70 years, must overcome to prevent further pain and suffering

The goals of Nadine’s consulting business

  • Works with facilities to protect celiac patients
  • Ensure compliance with ADA

How the media portrays the gluten-free lifestyle

  • Dissuades people from adopting diet (program sponsors influence messaging)
  • Negative headlines

How our understanding of celiac disease has changed over time

The recommendations of the 2004 NIH consensus meeting regarding celiac disease

  • Mass screening (meets WHO criteria)
  • Education for health care providers

The World Health Organization criteria for mass screening

  • Early clinical detection essential
  • Condition is common
  • Screening tests highly sensitive and specific
  • Effective treatment available
  • Untreated condition leads to complications

The autoimmune disorders associated with undiagnosed celiac disease

  • MS
  • Type 1 diabetes
  • Lupus
  • Rheumatoid arthritis
  • Sjögren’s
  • Vitiligo

The WHO definition of celiac disease

  • Characterized by hypersensitivity to gluten
  • Prevalence currently estimated at 1:1,000 worldwide
  • Screening trials suggest prevalence of 1:100
  • Results in weight loss, diarrhea, nutritional deficiencies
  • Caused by villous atrophy
  • May present as extraintestinal manifestations or remain clinically silent

Why celiac disease can’t be ruled out with a single test

  • Can be triggered at any point
  • HLA-DQ2 and HLA-DQ8 genes indicate genetic predisposition

Misconceptions about celiac disease in the US medical community

  • Thought to be digestive disorder, but really neurological
  • Can present with seizures, numbness, constipation, balance issues, celiac cerebellar ataxia

How skin issues are a reflection of what is going on internally

  • Epithelial skin is same tissue as inside

How damage to the small intestine leads to multiple health issues

  • Increased permeability of intestinal wall
  • Leaky blood brain barrier
  • Leaky blood vessels
  • Leaky lungs and skin

The classic symptoms of celiac disease

  • Chronic diarrhea
  • Malabsorption
  • Extreme weight loss
  • Malnutrition

What celiac disease looks like in children

  • Diarrhea, constipation
  • General abdominal pain
  • Failure to thrive
  • Falling off growth chart
  • Short stature
  • Learning disabilities
  • ADD, ADHD, ODD
  • Autism
  • Skin issues (eczema, cirrhosis, acne)
  • Delayed puberty
  • Dental problems
  • Anorexia, obesity
  • Bed wetting

The prevalence of celiac disease in older adults

  • 30% of people diagnosed with celiac disease are over 60

Potential signs of celiac disease in the aging population

  • Dementia
  • Alzheimer’s
  • Vision, hearing loss
  • Urinary problems
  • Cancer diagnosis (especially bowel cancer)
  • Ataxia
  • Arthritis
  • Hair loss
  • Fatigue
  • Osteoporosis
  • Anemia

The elements that get into your blood stream as a result of villous atrophy

  • Toxins
  • Heavy metals
  • Undigested food particles
  • Yeast, fungus
  • Parasites, other harmful bacteria

Top symptoms of celiac disease

  • Chronic anemia
  • Fatigue
  • Muscle, joint pain
  • Depression, irritability
  • Thyroid disorders
  • Infertility issues
  • GI problems (from mouth to rectum)
  • Migraine headaches
  • Psychiatric disorders
  • Seizures
  • Dermatitis herpetiformis
  • Down, Turner or Williams syndrome
  • Cardiomyopathy

The effects of gluten on the brain

  • Anger
  • Depression, anxiety
  • Learning disabilities
  • Lethargy
  • Insomnia
  • Brain fog
  • Schizophrenia
  • Dyslexia

Populations affected by celiac disease

  • Any age, race, gender
  • 3 million people all over the world
  • Study of healthy blood donors in Mexico found unexpectedly high prevalence of tTGA positivity
  • Now recognized as common disease among Middle Eastern and North African populations
  • 1:7 Americans suffer from non-celiac gluten sensitivity (43 million people)

The findings of an economic study by Columbia University

  • Non-diarrheal presentations now most frequent
  • Celiac disease grossly underdiagnosed in US
  • Average delay in diagnosis is 4-11 years for adults in North America
  • Significant improvement in quality of life when patients diagnosed and treated appropriately

The importance of ensuring that medications are gluten-free

Nadine’s recommendations around nutrition for celiac patients

  • Gluten- and dairy-free
  • Ideally Paleo
  • Super-good high fat

Things to consider re: the results of a celiac panel

  • A positive test guarantees intestinal damage
  • Include total IgA and IgG
  • 70% produce a false negative

Additional tests that offer valuable information

  • Fecal fat score (ask for #, over 300 indicates malabsorption)
  • Complete blood count
  • Comprehensive metabolic panel
  • Vitamin D3 level (below 40 ng/ml is critically low)
  • Vitamins A, E & K levels
  • Vitamin B6 & B12 levels
  • MTHFR gene test
  • Magnesium RBC test
  • Zinc level
  • Iodine level
  • B9/Folate level
  • Ferritin level
  • Iron level
  • Thyroid panel
  • Bone density test
  • Lipid panel
  • ANA test (autoimmune issues)
  • ESR test
  • CRP test

Surprising facts around celiac disease contrary to conventional wisdom

  • Only 15% of celiac patients have chronic diarrhea
  • 39% of celiac patients are overweight
  • Shampoos, cosmetics and airborne gluten affect patients with gluten intolerance and celiac disease
  • Super-good high fat diet is essential for celiac patients

 

Resources:

NIH Consensus Statement

“Where Have All the American Celiacs Gone?” in Acta Pediatrica

Montana Gluten Free

“Economic Benefits of Increased Diagnosis of Celiac Disease in a National Managed Care Population in the United States” in the Journal of Insurance Medicine

“Celiac Disease Could be a Frequent Disease in Mexico: Prevalence of Tissue Transglutaminase Antibody in Healthy Blood Donors” in the Journal of Clinical Gastroenterology

“Celiac Disease in Middle Eastern and North African Countries: A New Burden? in the World Journal of Gastroenterology

Recommended Labs

CDC 2013 Report Antibiotic Resistance Threats

Cyrex Laboratories

LabCorps

Glutenpro

EnteroLab

Primal Docs

Connect with Nadine: 

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Melodies of the Danube Gluten-Free Cruise with Nadine

Books by Nadine:

Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism

 

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